Lived Experiences Of Family Caregivers Research Articles

Challenges and support experienced by family caregivers seeking antiretroviral therapy services for children living with HIV/AIDS: a phenomenological study in Ghana.

Family caregivers of children living with HIV/AIDS in most cases are found to be overwhelmed and under-resourced, yet they are believed to be the primary source of support for children living with HIV/AIDS. Family caregivers experience different challenges that affect their children's antiretroviral therapy (ART) adherence. This study explored the lived experiences of family caregivers of children living with HIV/AIDS who sought ART services for these children at the St Joseph's Hospital of Jirapa, Ghana. Using a qualitative phenomenology design and a semistructured in-depth interview guide and using purposive sampling, data were gathered from 13 family caregivers of children living with HIV/AIDS receiving ART treatment at St Joseph's Hospital, Jirapa following ethical approval. All interviews were audio-taped and transcribed verbatim. Reflexive thematic analysis was used to analyse the transcribed data. Six themes were generated: five challenges and one support. Family caregivers of children living with HIV/AIDS experienced: (1) Financial challenges, (2) Human-related challenges, (3) Challenges at HIV testing and counselling (HTC) centres, (4) Challenges with transportation, (5) Challenges in disclosing children's HIV status to them and (6) Support received from HTC and their family members. Family caregivers of children living with HIV/AIDS experience daunting challenges in their quest to care for their children. Governmental and non-governmental HIV/AIDS programme support should include small business skills training and acquisition including capital to help set up small-scale businesses for such caregivers to reduce their financial challenges. Access to ART at clinics closer to caregivers is also key to promoting adherence. Family and community support has been recognised as key to enhancing ART adherence. Education of caregivers on policy regarding disclosure of the HIV/AIDS status of children, the need to work to reduce the time spent by caregivers at HTC, and ensuring privacy by limiting access to HTCs to only caregivers and their children, are important to enhancing adherence.

Family caregiver experiences and needs across health conditions, relationships, and the lifespan: a Qualitative analysis

ABSTRACT Purpose The purpose of this study was to understand the lived experiences of family caregivers who provide care to individuals across a broad range of ages, caregiving relationships, and health conditions and/or disabilities. Family caregiver research is typically siloed by health condition or by caregiving relationship, leaving gaps in understanding similarities and differences among caregivers. Methods We hosted three virtual focus groups with diverse family caregivers (n = 26) caring for an individual with a long-term disability and/or health condition(s). We conducted a qualitative thematic analysis using an iterative, inductive process. Results Participants primarily expressed shared experiences, despite having unique caregiving situations. We identified themes among a) caregiver experiences: Trying to Do It All, Balancing Complex Emotions, Managing Expectations, and Adjusting to Changes Over Time and b) caregiver needs: Longing for Breaks and Self-Care; Lacking Help, Support and Resources; and Desiring Understanding and Recognition. Conclusions These findings emphasize that many elements of the caregiving experience transcend care recipient age, condition, and relationship and are applicable to clinicians, researchers, and policy makers. The evidence of shared caregiver experiences can guide efficiencies in policy and practice (e.g., pooling of existing resources, expansion of interventions) to meet the needs of a broader population of caregivers.

Unveiling the Unseen: Exploring the Lived Experiences of Family Caregivers of Young Adults with Chronic Mental Disorders: A Qualitative Phenomenological Study

Introduction: One of India’s most valuable resources is its young people, and this generation needs to be nurtured for the bright future of the nation. However, when the young generation is affected by chronic mental disorders, families find it difficult to take care of them and are burdened with the responsibility for several years. Aim: To explore the lived experiences of Family Caregivers (FCGs) of young adults with chronic mental disorders. Materials and Methods: This qualitative study was conducted at the selected mental inpatient and outpatient Department of a selected mental health facility in Urban Bangaluru, Karnataka, India from April 2021 to December 2021. The authors used a phenomenological qualitative study to explore the lived experiences of family caregivers of young adults with chronic mental disorders {mania, depression, Bipolar Affective Disorder (BPAD), schizophrenia} aged between 18-40 years. The Family Caregivers of young adults undergoing treatment were approached for written informed consent and recruited through purposive sampling. Data were collected using face-to-face, indepth, semi-structured interviews. Each interview lasted around 45 minutes to one hour, and data saturation was achieved with 15 samples. Interviews were conducted over a period of nine months. The audio-recorded interviews were transcribed, interpreted, and investigated using Colaizzi’s data analysis framework. Baseline variables were analysed using descriptive statistics. Results: In the present, the family caregivers’ ages ranged from 28 to 60 years, with the majority (67%) being females and employed. One of the family members was affected by a mental disorder. A rehabilitation facility was unavailable to the majority (67%) of them near their residence. Regarding the young adults with chronic mental disorders, the majority (74%) were unemployed and diagnosed with affective disorders. The maximum duration of illness was 20 years, with onset typically at the age of 17-21 years. From the analysis, six main themes and 36 subthemes emerged. The main themes were as follows: family caregivers experience difficulty in identifying the responsible person and support system, providing physical care, tackling emergencies, problems with medication and early identification of relapse, problems with indecent behaviour, and knowledge deficit related to mental disorders and their management. Conclusion: The study concludes that family caregivers of young adults with chronic mental disorders experience various psychosocial and economic issues and problems while caring for a young adult with chronic mental disorders. The knowledge generated from the present study can be utilised by mental health professionals to plan home-based care strategies to improve the quality of life and reduce the burden of care for FCGs.

The Lived Experience of Family Caregivers of Persons With Serious Mental Illness In Saudi Arabia

The aim of this study was to explore the lived experiences of family caregivers of persons with serious mental illnesses at home. A hermeneutic phenomenology study was utilized. Data were collected via purposive and snowball sampling. In-depth phone calls and semi-structured interviews of 15 family caregivers using open-ended questions were used. All interviews were audio-recorded and transcribed verbatim. Data was analyzed using Diekelmann’s process and guided by Ray\'s Transcultural Caring Dynamics Model. Findings identified an overall theme of “the dynamic of an endless cycle of care” and three relational themes: (a) development of caring experiences, (b) living culture values and beliefs, and (c) meaning of care. The findings informed the development of culturally appropriate systems through an understanding of families’ experiences from a cultural perspective to value patient and family-centered care, social support, and enhanced community mental health care.

Family Caregivers' Trajectories of Distress While Caring for a Person With Serious Mental Illness.

Serious mental illness (SMI) can significantly impact the lives of individuals and their families. These families often experience great emotional distress over time due to the early onset of SMI, which in turn leads to long-term trajectories and only partial recovery. However, we do not fully understand the emotional distress of family caregivers. Thus, our aim was to enrich the understanding of the lived experiences of family caregivers' emotional trajectories of distress while caring for persons with SMI. We conducted a secondary analysis using a hermeneutic approach to the narratives of seven family caregivers from a study on living with voices unheard by others. Participants' trajectories of emotional distress came forth as being thrust on an unpredictable, intensely worrisome, and indefinite journey. The following themes highlighted this tumultuous journey: fumbling in the dark trying to grasp the incomprehensible, "on your toes"-enduring unpredictability, facing different forms of fear, and battling waves of sadness and regret. Caregivers face multiple threats to their well-being and sometimes even to their health. Their distress appeared to vary according to their relationship with the person with SMI, whether they lived with the ill person, illness trajectory, and amount of violent or suicidal behavior. The results underscore the need for individualized and timely information, opportunities for dialogue with healthcare providers with and without the person with SMI, and inclusion in care planning. Caregivers who have experienced trauma, threats of violence, and rejection require special attention.

'There is always good fortune in misfortune to encourage us in coping with difficulties'-The lived experiences of family caregivers of people with dementia during the COVID-19 outbreak in China: A phenomenological study.

To describe the lived experiences of family caregivers of individuals with dementia during the coronavirus disease (COVID-19) outbreak in China. This study used a descriptive phenomenological research method. Between May and September 2021, semi-structured interviews were conducted with 22 family caregivers of people with dementia. Colaizzi's method was used for manual analysis. Qualitative data revealed an overarching experience of finding 'There is always good fortune in misfortune to encourage us in coping with difficulties'. Three themes emerged: family reactions to the COVID-19 outbreak, feeling supported by multiple resources performing respective functions and resilient adaptation to new situations. During the COVID-19 outbreak, family caregivers of people living with dementia in China looked for positive aspects among difficulties and experienced corresponding reactions, social support resources and resilient adapted coping styles. Nurses in China and other countries facing similar pandemic characteristics, cultures or economic development levels, can guide family caregivers to look at family hardships from a positive perspective, develop interventions to rapidly respond to families' reactions after a disaster and help them identify social support resources and form adapted coping styles. We identified the resilience and the positive experiences of Chinese family caregivers of individuals with dementia during the COVID-19 outbreak. The results can inform countries with similar cultures and economic levels, offering measures to support their adaptation to pandemics. This study followed the COREQ guidelines. Family caregivers of people with dementia who met the inclusion criteria and who were interested in sharing their understanding of their experiences, participated in the study.

The audience impact of an ethnodrama based on the lived experiences of family caregivers of loved ones with a mental illness

There is paucity of research on the issues concerning family caregivers of loved ones with mental illness despite an increasing awareness of the importance of caregiving as an essential component of care. In this study, we examine the impact of an ethnodrama to (1) authentically reflect the experience of caregivers for people diagnosed with a mental illness and (2) impact audience beliefs and feelings about mental health and caregiver realities. Two focus group sessions were held with 21 family caregivers from a community support group from which an ethnodrama was developed and then presented across four performances to a total of 110 audience members. Audience members completed pre- and post-performance questionnaires containing items related to stigma, respect, caregiving attitudes and self-evaluation. Results indicated that audience members reported the play to realistically reflect the reality of caregiving for a loved one with mental illness, and statistical analyses revealed significant pre-post changes in the four categories of beliefs and feelings examined. The results indicate that witnessing the performance was a valuable educational experience and that ethnodrama has a place in mental health and mental illness education.

Retaining Family Identity: Lived Experience of Caregiving in the Black Community

Aimed at exploring the lived experiences of family caregivers of care recipients in the Black community, this study uses Heideggerian phenomenology to elucidate the meaning of caregiving as defined from the lived experiences of the caregivers themselves. Using a nonprobability purposive design, 12 caregivers from the Black community were interviewed to examine their cultural and lived experiences of caring for family members with Alzheimer’s Disease or Related Dementia (ADRD). Six main themes related to the caregiving role and experience were identified. These themes coalesced to generate a major theme of Maintaining a Family Identity. While the experience of caregiving was expressed as emotionally difficult, family caregiver’s cultural backgrounds emphasized a responsibility to provide care. This led to an ambivalent perception of formal support. Utilization of formal support to address caregiving difficulties was considered acceptable when it was in line with caregivers’ need to retain a sense of familial responsibility and consistency of identity. Gaining further insight into cultural factors associated with the caregiving experience included the need for increased sensitivity in providing services that addressed the psychoemotional stress that can arise from Black caregivers’ dilemma in attempting to maintain familial identity. Attention to the familial relationship within the Black community will assist policymakers, researchers, and practitioners to develop services that caregivers in the Black community consider acceptable, accessible, and effective in enhancing their caregiving experiences.

Experiences of family caregivers of people with spinal cord injury at the neurosurgical units of the Komfo Anokye Teaching Hospital, Ghana.

Spinal cord injury (SCI) often leaves affected persons with a lifelong demand for care. As a result, the effect of the condition goes beyond the injured person to affect family members and significant others who have to adjust their lives to provide care and support. However, little is known about the experiences of these family caregivers regarding the care of people with SCI in Ghana. Exploring their experiences would enhance the understanding of family caregiving of people with SCI and contribute to policy intervention. This qualitative descriptive phenomenology study used the purposive sampling method to select 10 family caregivers. Data were collected using a semi-structured interview guide through individual in-depth interviews. Written informed consent was obtained and interviews were audio-recorded and transcribed verbatim. Data were manually analysed following Colaizzi's method of data analysis. In all, 4 main themes emerged from the analysis of data (1) becoming a caregiver, (2) roles of the caregiver, (3) the burden of caregiving, and (4) coping strategies. The family caregivers provided vital assistance to their relatives with SCI and experienced physical and financial burdens as a result of the care. Due to the strains involved in the caregiving process, family caregivers adopted various strategies to cope with the situation. This study has provided evidence of the lived experiences of family caregivers of people with SCI in the Ghanaian context and further supports the findings of previous studies. Measures including training, counselling, and instituting social support services for family caregivers should be considered by the management of healthcare institutions to enhance the experiences of family caregivers.

Exploring the experience of family caregivers of children with medical complexity during COVID-19: a qualitative study

Background and objectivesChildren with medical complexity have been disproportionately impacted by the COVID-19 pandemic and the associated changes in healthcare delivery. The primary objective of this study was to gain a thorough understanding of the lived experiences of family caregivers of children with medical complexity during the pandemic.MethodsWe conducted semi-structured interviews with family caregivers of children with medical complexity from a tertiary pediatric hospital. Interview questions focused on the aspects of caregiving for children with medical complexity, impact on caregiver mental and physical well-being, changes to daily life secondary to the pandemic, and experiences receiving care in the healthcare system. Interviews were conducted until thematic saturation was achieved. Interviews were audio recorded, deidentified, transcribed verbatim, coded and analyzed using content analysis.ResultsTwelve semi-structured interviews were conducted. The interviews revealed three major themes and several associated subthemes: (1) experiences with the healthcare system amid the pandemic (lack of access to healthcare services and increased hospital restrictions, negative clinical interactions and communication breakdowns, virtual care use); (2) common challenges during the pandemic (financial strain, balancing multiple roles, inadequate homecare nursing); and (3) the pandemic’s impact on family caregiver well-being (mental toll, physical toll).ConclusionsFamily caregivers of children with medical complexity experienced mental and physical burden due to the intense nature of their caregiving responsibilities that were exacerbated during the pandemic. Our results highlight key priorities for the development of effective interventions to support family caregivers and their children.

The Impact of Stroke on Family Caregivers

Research Objectives To illustrate the quality of life, lived experiences, and unmet needs of family members of individuals with stroke. Design Embedded within a cross-sectional design, a qualitative study was undertaken to explore the lived experiences of family caregivers. Using purposive sampling, family caregivers of individuals with stroke were recruited. Findings from semi-structured interviews were analyzed using a thematic approach. Setting Recruitment took place from the general community. Participants 17 adults (12 females, 5 males) were recruited. Participants had to be a (1) family member of an individual with first time stroke, (2) 18 years and above, and (3) have adequate communication skills. Interventions Not applicable. Main Outcome Measures An interview guide containing questions that probed the quality of life of family caregivers was used. Results Preliminary findings generated three themes: (1) trying to hold our lives together, (2) the road to normality is filled with uncertainties, and (3) the value in engaging a domestic helper. Many caregivers saw a disruption to their previous roles; thus, managed this by taking up new responsibilities and balancing between caregiving and other life commitments. The second theme demonstrated the desire to achieve normality; however, this was not a straightforward path. Some obstacles included fused relationships, and constant worrying. In the final theme, participants described the value of hiring a domestic helper in providing practical, and emotional support during times of uncertainty. Conclusions Family caregivers of individuals with stroke reported varying experiences. It is important to provide timely holistic support, and resources to ensure that family members are adequately prepared. Future studies can help to promote, develop, and evaluate the efficacy of family-centered programs to cater to the needs of family members after stroke. Author(s) Disclosures None. To illustrate the quality of life, lived experiences, and unmet needs of family members of individuals with stroke. Embedded within a cross-sectional design, a qualitative study was undertaken to explore the lived experiences of family caregivers. Using purposive sampling, family caregivers of individuals with stroke were recruited. Findings from semi-structured interviews were analyzed using a thematic approach. Recruitment took place from the general community. 17 adults (12 females, 5 males) were recruited. Participants had to be a (1) family member of an individual with first time stroke, (2) 18 years and above, and (3) have adequate communication skills. Not applicable. An interview guide containing questions that probed the quality of life of family caregivers was used. Preliminary findings generated three themes: (1) trying to hold our lives together, (2) the road to normality is filled with uncertainties, and (3) the value in engaging a domestic helper. Many caregivers saw a disruption to their previous roles; thus, managed this by taking up new responsibilities and balancing between caregiving and other life commitments. The second theme demonstrated the desire to achieve normality; however, this was not a straightforward path. Some obstacles included fused relationships, and constant worrying. In the final theme, participants described the value of hiring a domestic helper in providing practical, and emotional support during times of uncertainty. Family caregivers of individuals with stroke reported varying experiences. It is important to provide timely holistic support, and resources to ensure that family members are adequately prepared. Future studies can help to promote, develop, and evaluate the efficacy of family-centered programs to cater to the needs of family members after stroke.

Ambiguous loss in family caregivers of loved ones with cancer, a synthesis of qualitative studies.

The purpose of this synthesis of qualitative studies is to explore manifestations of ambiguous loss within the lived experiences of family caregivers (FCG) of loved ones with cancer. Grief and loss are familiar companions to the family caregivers of loved ones with cancer. Anticipatory loss, pre-loss grief, complicated grief, and bereavement loss have been studied in this caregiver population. It is unknown if family caregivers also experience ambiguous loss while caring for their loved ones along the uncertain landscape of the cancer illness and survivorship trajectory. We conducted a four-step qualitative meta-synthesis of primary qualitative literature published in three databases between 2008 and 2021. Fourteen manuscripts were analyzed using a qualitative appraisal tool and interpreted through thematic synthesis and reciprocal translation. Five themes were derived, revealing FCGs appreciate change in their primary relationship with their loved ones with cancer, uncertainty reconciling losses, an existence that is static in time, living with paradox, and disenfranchised grief. The results of this synthesis of qualitative studies complement the descriptors of ambiguous loss presented in previous research. The results of this synthesis of qualitative studies complement the descriptors of ambiguous loss presented in previous theoretical and clinical research. By understanding ambiguous loss as a complex and normal human experience of cancer FCGs, oncology and palliative care healthcare providers can introduce interventions and therapeutics to facilitate caring-healing and resiliency. Untreated ambiguous loss can result in a decrease in wellbeing, loss of hope, and loss of meaning in life. It is imperative that cancer FCGs experiencing ambiguous loss are recognized and supported so that they may live well in the family disease of cancer.

Lived Experience of Iranian Family Caregivers of Tubercular Patients: A Qualitative Study

Objective. To investigate the lived experience of family caregivers of persons with tuberculosis. Methods. In this study, the method of hermeneutic phenomenology. Data were collected through online in-depth semi-structured interviews with nine family caregivers of TB patients. The obtained data were thematically analyzed to explain the concept of home care for TB patients through van Manen's 6-step methodology. Results. After the thematic analysis, three main themes of caregivers'; mental distresses, quality care stasis, andfacilitated care were obtained from 944 primary codes and 11 categories. Conclusion. Family caregivers of these patients suffer from mental distress. This issue affects the quality and ease of caregiving for these patients. Therefore, policymakers of this area should pay attention to the family caregivers of these patients and attempt to provide support; they should try to improve their quality of life.

Lived Experience of Iranian Family Caregivers of Tubercular Patients: A Qualitative Study.

To investigate the lived experience of family caregivers of persons with tuberculosis. In this study, the method of hermeneutic phenomenology. Data were collected through online in-depth semi-structured interviews with nine family caregivers of TB patients. The obtained data were thematically analyzed to explain the concept of home care for TB patients through van Manen's 6-step methodology. After the thematic analysis, three main themes of caregivers' mental distresses, quality care stasis, and facilitated care were obtained from 944 primary codes and 11 categories. Family caregivers of these patients suffer from mental distress. This issue affects the quality and ease of caregiving for these patients. Therefore, policymakers of this area should pay attention to the family caregivers of these patients and attempt to provide support; they should try to improve their quality of life.

Understanding the lived experiences of family caregivers of individuals with dementia in Soweto, a South African Township.

This study was undertaken to understand South African family caregivers’ lived experiences of individuals living with dementia in a predominantly Black African township. A homogenous sample of thirty family caregivers was recruited using purposeful sampling methods and interviewed using a semi-structured approach. Reflective Thematic Analysis (RTA) yielded four broad themes: Understanding Dementia, Struggles and Sacrifice, Mental Health and Protective Factors. Findings reflect how dementia is understood by family caregivers and their community, the struggles and sacrifices that they endure, the impact of caregiving on caregiver mental health and the protective factors that enable caregivers to cope, despite their difficulties. Our findings lead to new insights regarding dementia caregiving amongst family caregivers in South Africa. First, there appears to be a shift in perception – away from a cultural/spiritual paradigm – and a lack of pressure to conform to community conceptualizations of dementia among individual caregivers. Second, dementia caregiving had a negative effect on caregiver mental health and elicited stress, anxiety and grief reactions. Third, caregivers did not feel emotionally supported and expressed not receiving any assistance with their daily practical tasks. Fourth, before receiving a diagnosis, family caregivers were viewed as the perpetrators of abuse and/or neglect against their family members with dementia, instead of individuals with dementia being stigmatized by the community due to their behavioural symptoms. Additionally, help-seeking was not hindered by fear or stigma, but was motivated by caregiver distress as dementia-related behaviours began to manifest and caregivers feared being perceived as perpetrators of abuse. Psychoeducational interventions should be tailored to targeted population groups that are in need of further training to address the lack of awareness in communities, insufficient knowledge of dementia amongst healthcare professionals and the practical, emotional and psychological difficulties that family caregivers endure to facilitate mental health care and resilience.

A qualitative systematic review of family caregivers' experiences of artificial nutrition and hydration at home: A meta-ethnography.

BackgroundArtificial nutrition and hydration (AN&H) may be provided to individuals in the home environment, and family caregivers are often involved in the management of this intervention. This experience can have multiple consequences for families.AimsThe aim of this meta‐ethnography is to explore and synthesize the personal experiences of family caregivers providing care to a person receiving home AN&H.Methods & ProceduresA comprehensive search of the literature was conducted without any time limitations applied. Seven stages of meta‐ethnography were followed. Public and patient involvement was incorporated into the development of the line of argument synthesis in this review. This review is reported following the eMERGe guidelines and it was registered in PROSPERO.Main ContributionA total of 22 studies were included representing the experiences of 336 family caregivers. Two main themes emerged: (1) sink or swim, being thrown in at the deep end; and (2) professional support as a bedrock. The first theme represents the experiences from the very start of home AN&H when the family caregivers may be overwhelmed with the level of skills they have to acquire. With time, family caregivers perceived the benefits, but also the challenges, associated with managing home AN&H. If a person receiving home AN&H was able to continue with some oral intake, it had a positive impact on family caregivers’ experiences. The second theme represents the influence of professional support on the lived experience of family caregivers managing home AN&H. This support should be individualized, comprehensive, and co‐created with the family caregiver and the person receiving home AN&H.Conclusions & ImplicationsThis review concluded that caring for a person receiving home AN&H can be very challenging for family caregivers. Family caregivers require personalized support from a multidisciplinary team of healthcare professionals to acquire skills, competence and confidence in this new role. Speech and language therapists are important members of this multidisciplinary team because they can facilitate a continuation of oral intake as appropriate.WHAT THIS PAPER ADDSWhat is already known on the subject AN&H has an impact not only on the person receiving it but also on the wider family and family caregivers. Healthcare professionals have a role in supporting people living with AN&H. What this paper adds to existing knowledge This review presents a rigorous qualitative evidence synthesis that adheres fully to the eMERGe guidance for reporting of meta‐ethnography. Within this meta‐ethnography a current caregiver was consulted during the creation of the line of argument synthesis to provide a unique perspective to the review process. This review synthesized the current body of evidence that explores the lived experience of home AN&H (any type) for family caregivers, identifies where professional support is required and highlights current gaps. What are the potential or actual clinical implications of this work? Family caregivers require personalized support from a multidisciplinary team of healthcare professionals to adjust to living with home AN&H. This support assists people living with home AN&H in perceiving benefits and developing more positive experiences. Speech and language therapists are important members of the multidisciplinary team supporting individuals with home AN&H and their family caregivers as they can facilitate a continuation of oral intake as appropriate.

"I found myself alone" - A phenomenological study of the home care workers' experience during the COVID-19 pandemic.

Home care workers (HCWs) are a highly heterogeneous population in Italy in terms of their professional qualifications. HCWs play an important role in helping patients affected by chronic diseases and their families. Although many investigators have studied the lived experiences of family caregivers, few have been conducted “to give a voice” to HCWs and even fewer have examined the experiences of HCWs during the present COVID‐19 pandemic. We investigated the lived experiences of HCWs during the first wave of the pandemic in Italy. Cohen's phenomenological research approach was used to conduct this study. In our study, we enrolled and interviewed 19 HCWs who were female, and most were married, with an average age of 52 years. The participants were enrolled from September 2020 to November 2020, after the first COVID‐19 wave in Italy. Four main themes emerged from the analysis of the data: (1) “I found myself alone”; (2) from invisibility to visibility; (3) a fear of getting sick and infecting others; and (4) “Health or work? That is the question.” Understanding HCWs' lived experiences, especially those related to the COVID‐19 pandemic, is a first step in giving a voice to this important but vulnerable population in the healthcare workforce.

Hermeneutic phenomenology of lived experience of family caregivers of critically-ill patients sustained by healthcare technologies in Benin City, Nigeria

Background: Critical illness causes a severe financial impact on households not only because of illness-related inability to work but also because of the cost of medical care. Although the patients have the potential for recovery, they are usually presented with a life-threatening situation. Our study aimed to explore the lived experience of family caregivers caring for critically-ill patients. Materials and Methods: A qualitative study using a hermeneutic phenomenological design, to explore the lived experience of ten family caregivers caring for critically-ill patients admitted to the University of Benin Teaching Hospital, Benin-city in 2022. This study followed a hermeneutic phenomenological design using an in-depth interview of ten family caregivers who met the inclusion criteria: a family member who participated actively in the care was included. Data were collected, transcribed, and analyzed using Nvivo software and Paul Ricoeur’s theory for interpretation. Results: Based on Paul Ricoeur’s theory of interpretation, five themes were identified as the experience of family caregivers: caring neglect, psychological support, and words of encouragement, lack of confidence in nursing intervention, hopeless situation, and financial burden. Conclusion: This study shows that understanding the experience of family caregivers provides better and quality care. It also found that the hospital management needs to be aware of the identified caring neglect among family caregivers and provide a comprehensive health policy to accommodate their physiological needs while in the hospital

The subjective experience of family caregivers of people living with Parkinson's disease: a meta-ethnography of qualitative literature.

Parkinson's disease patients (PwPD) rely heavily on their family caregivers. However, there remains uncertainty regarding the subjective experience of the family caregivers of PwPD. This study aims to provide an in-depth summary of the current knowledge about the subjective experiences of family caregivers caring for PwPD, to understand the factors that influence this experience and to provide the evidence for healthcare services. We conducted a systematic review and meta-ethnography using Noblit and Hare's approach. The search strategy used MeSH terms in combination with free-text searching of 10 databases (from their inception until July 2021). Titles and abstracts were reviewed by two reviewers and, for the studies that met the eligibility criteria, full-text articles were obtained. The Critical Appraisal Skills Program (CASP) checklist was employed to assess the quality of studies. A total of 3318 studies were screened and 29 qualitative studies were included in this review. These studies recorded the experience of 399 participants across 12 countries, most were females. Five themes emerged: (a) feelings related to PD; (b) challenges to family life; (c) external challenges; (d) adjustment and adaptation; (e) external support. We propose a new conceptual model that highlights that the experiences of caregivers for PwPD are dynamic and influenced by a variety of internal and external factors. Our findings illustrate the complex and dynamic experiences of family caregivers for PwPD. It is necessary to explore how the influencing factors can be modified to improve the lived experience of family caregivers.

Family caregivers’ support for older adults in Nigeria

A scoping review of literature was explored for a better understanding of the lived experiences of family caregivers for elderly in Nigeria. Unlike professional caregivers such as medical doctors, nurses and trained care workers, informal caregivers, often family members, or friends, also provide care to individuals with a variety of conditions including cancer, dementia, and advanced age. Family Caregivers of elderly with chronic illness in Nigeria, are exposed to burden associated with caregiving activities. This could involve the delivery of complex health care services alongside Activities of Daily Living (ADL). Despite the satisfaction and fulfillment that comes with caring for a loved one, family caregivers often experience negative psychological, behavioural, and physiological effects on their daily lives and health. creating awareness and understanding the burden and coping mechanism of this population is crucial to making decisions at all levels, which best support family caregivers.